Two Events Supporting OKC Causes

Our calendar is filled with great local events for families. One thing we especially love to see on the calendar is an event that helps a local cause. Below, meet two Oklahoma City girls who overcame serious childhood health conditions and learn how you can support them and others like them.

Central Oklahoma Heart Walk

On April 21, 10,000 people are expected to gather in downtown Oklahoma City for the annual Central Oklahoma Heart Walk. The free, family-friendly event features a 1K and 5K walk and a half-mile obstacle course designed specifically for ages 5-12.

The walk raises money to support research and lifesaving education through the American Heart Association. It’s the type of research that helped save the life of 6-year-old Oklahoma City native Kennedy Lively right after she was born.

Lively was born with a congenital heart defect called transposition of the great arteries, which was complicated by sub pulmonary stenosis. At just four hours old, she had a balloon procedure as a temporary fix until she could undergo her permanent operation. At three months old, Kennedy had open heart surgery to mend her heart for a more permanent fix.

“Before Kennedy, I didn’t even know they did open heart surgery on newborn babies,” said Kennedy’s mom Jarie Lively. “A newborn heart is the size of a walnut so it’s hard to imagine surgery on something so tiny.”

Jarie said Kennedy’s diagnosis totally changed her life and overnight she went from never giving the American Heart Association a thought to relying on the organization for the care and support to keep her baby alive. She now considers the local American Heart Association representatives her family.

Kennedy and Jarie will be at this month’s walk along with thousands of other supporters. Jarie said the annual event is Kennedy’s favorite day of the year, even more special than Christmas.

“She gets to celebrate everyone with special hearts,” Jarie said of her daughter. “When she was younger, she thought all 10,000 people at the walk were there for her. Now she’s old enough to realize all these people have families and they’re survivors, too and that is so special.”

The event will start at 8 a.m. April 21. For more information visit www2.heart.org.

Hope Gala

Local fourth grader Lily McCook counts her carbs and sends her dad photos of the snacks she eats at school. No, she’s not on some crazy youth fad diet. Lily has Type 1 Diabetes and is surprisingly responsible with handling her health considering her age. Lily’s dad, Clayton, explained what it felt like to hear about Lily’s diagnosis when she was just 3 years old.

“It’s been a roller coaster trying to deal with the shock of it and how to handle it,” he said. “She started on shots right after the diagnosis. We had to give her a shot before every meal and one at night, a minimum of four shots a day which is a lot for a 3 year old.”

She handled it exceptionally, he said, and has been doing so ever since. Clayton said he and his wife Cindy lean a lot on other parents and local organizations for help. He considers himself blessed to be surrounded by a supportive community of other parents with children with Type 1 Diabetes to show him the ropes. Now, Lily depends a lot on technology to keep her informed about her blood sugar levels.

Before, Lily could use a continuous glucose monitor that would update her levels every five minutes without a finger stick. The catch was that the parent who wanted to read the results had to be in the same room as the person wearing the transmitter. Clayton discovered Nightscout and all that changed.

The Nightscout community of parents with kids with Type 1 Diabetes reverse engineered the receiver so as long as the parent and child both had access to the internet, parents could remotely see their glucose levels. Any parent who visits www.nightscout.info can find code to help them outfit their own receivers, Clayton said, which is just another example of how other supportive people in the Type 1 Diabetes community make a difference.

Locally, the McCook family has been supported and encouraged by Juvenile Diabetes Research Fund (JDRF), Clayton said. When Lily was first diagnosed, representatives with the organization brought the family a Bag of Hope—a tote filled with tools and resources to educate them about the news. Clayton said their outreach and the support of other parents helps tremendously, especially when you’re first facing a new diagnosis.